Downloadable report on the NIH State of the Knowledge Workshop on ME/CFS, held in Bethesda in April 2011

The Office of Research on Women’s Health, in collaboration with the Trans-NIH ME/CFS Working Group, hosted an NIH State of Knowledge Workshop on ME/CFS on April 7-8, 2011, to bring together patients, advocates, and scientists from across the nation to review and discuss the opportunities and gaps in ME/CFS research.

Topics covered at the workshop included overlapping categories to address the multidisciplinary nature of the illness, including: infectious diseases, systems biology, immunology, neurology, exercise physiology and energy metabolism, diagnosis and biomarkers, treatment, and opportunities for communication.

The report from the workshop can be downloaded from this website by clicking HERE.

2 thoughts on “Downloadable report on the NIH State of the Knowledge Workshop on ME/CFS, held in Bethesda in April 2011”

“The core symptom of Chronic Fatigue Syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME) or ME/CFS, is fatigue, an ubiquitous experience associated with many other illnesses.”

The NIH is now altering the meaning of ME by removing the actual symptoms, signs and recorded abnormalities. In affect, they are replacing CFS with the words ME and keeping the CFS exclusionary criteria.

The conference was a mess, with a mix of some science and facts, and a slew of people with opinions and no evidence.

Human gammaretroviruses (HGRVs) are again watered down to one variant and one strain of that variant, XMRV VP62, where they claim the origin is debatable. This comment is without scientific evidence and should not be in a document from the NIH.

As only 3 full length sequences were determined from the original ME paper on HGRVs, it is not known what variants or multiple variants the other 65 positives in the study had. The WPI and NCI have reported since March 2010 that they are detecting polytropic and modified polytopic variants in that cohort and others. The same variants the second positive study detected. Sequences from all those groups and variants are in the GenBank.

The paper Paprotka et al. that claims to have discovered the origin of the XMRV VP62 variant has now been shown to be incorrect with the discovery that the JHK virus, first seen in 1989, is an XMRV variant. That findings predates claims of a cell line created from 1992 onward. The result is that there are now 3 positive HGRV ME/cfs studies.

“Furthermore, XMRV has been detected in laboratory reagents that also tested positive for mouse mitochondrial DNA, indicating the presence of contaminating mouse DNA.” – No reagents infected with XMRV or MLV have been in the labs detecting the virus in ME patients.

My view of the Trans-NIH Workshop is that it shows many positive things, such as:
• There is a great deal of Biomedical Science which has been and is being done looking into ME/CFS.
• There is general agreement that by working across disciplines there will be massive improvements in the care of ME/CFS patients.
• There was great regard shown for patients by the experts in the field, which has motivated the medical scientist investigate the problems of ME/CFS.
For me, the sections which gave me such hope are:
• Dr Lucinda Bateman who runs a ME/CFS clinic in Utah (see day two at ~165 minutes).
• Dr Nancy Klimas from Miami University, with her work on Immunology Biomarkers (see day 2 at ~14 mins).
• Dr G Broderick of the University of Alberta whose area of expertise is Systems Biology and networks (see day 1 starting at ~218 minutes).
• Dr Kathleen Lite from the Neurology field (see day 1 starting ~370 minutes).
I agree that the XMRV presentations were disappointing but then again if there had been such a simple fix then I am sure this would have been found sooner.

I am absolutely convinced that the old fashioned 1900’s subjective view of ME/CFS will soon be transformed into the new 21st century objective problem that we all know it to be. We just have to ensure that the objective scientific data is presented clearly and concisely to NICE, MRC and those GPs who still seem to have the old fashioned view.